Help at Schools for Children and Adolescents with Bladder and Bowel Issues Davina Richardson, Bladder & Bowel UK Brenda Cheer, ERIC – The Children’s Bowel & Bladder Charity Carol Joinson & Katie Whale, University of Bristol SAPHNA Annual Conference, Manchester Metropolitan University, 12th June 2018

Introduction Who we are: Brenda Cheer, ERIC Nurse Davina Richardson, Children’s Specialist Nurse Carol Joinson, Reader in Developmental Psychology Katie Whale, Health Psychologist Members of the Paediatric Continence Forum

Aims of workshop Our workshop will cover: The transition into primary school of children with bladder and bowel issues.  What is currently in place in primary schools and what is being done by ERIC and Bladder and Bowel UK on 'Help at Schools’ for children with continence issues. The joint project by University of Bristol and ERIC on supporting young people at secondary school with bladder and bowel issues.

Transition into primary school of children with bladder and bowel issues

Being toilet trained is one of the key skills that children need to develop independence, self-esteem and confidence to thrive at school.   Ofsted guidelines state that every child should be able to go to the toilet independently by the age of five. In 2016, 700 education staff working with children between the ages of three and seven responded to a joint survey between ERIC and the Association of Teachers and Lecturers. 70% said more children are now starting school without being toilet trained, compared to five years ago, this increased to 100% of staff working with children aged three to five. The message here is that toilet training is a requirement for ALL children, but that there is an increasing delay in achieving it.

Transition into primary school of children with bladder and bowel issues So, rather than focussing on school entry for those with bladder and bowel issues, I would like to talk about all children.

Transition into Primary school How can we help children to be bowel and bladder ready? → Early intervention – not waiting for problems to arise → Reaching the parents of every child

Specific resources Explaining that these are designed to be given to the parents of EVERY child, to promote healthy bladders and bowels and try and reduce the incidence of bladder and bowel issues. Probably look at paper copies to brielfy explain contents.

Signposting to further resources on the ERIC website: For children and teenagers For parents and carers For health care professionals At this point I would like to switch to the ERIC website, to quickly navigate around the most relevant areas for children/teenagers, parents/carers and HCPs.

Help at School for children with continence issues

Continence problems in primary age children Delayed toilet training Functional continence problems Constipation with or without soiling Daytime wetting Night time wetting Congenital abnormalities of bladder/bowel

Issues that compound the problems Poor toileting facilities Poor understanding of the problems Parents/carers Health care professionals School staff Inappropriate expectations Lack of services to support

What is already happening? Managing medical needs in schools (DfE 2015) equivalent or similar in devolved nations Equality Act 2010 Individual healthcare plans Standards for school premises Response from school is mixed and depends on understanding of the issues

What can be done? Guidance, education, practical support for schools Toilet access Fluid intakes Health promotion work to help children, families and others understand what is normal Multiagency working to address individual problems/needs Effective communication at all levels

Supporting individual children Individualised assessment and treatment Proactive approach with schools Ensure they understand the problem Access to drinks and toilet Access to the toilet Support with changing Ensure communication on transition to secondary school

What Next? Bladder and Bowel UK and ERIC joint working on a best practice guidance document for schools Document to cover all issues Adaptable www.bladderandbowel.co.uk www.eric.org.uk

Increasing understanding of the needs of young people with continence problems at secondary school Carol Joinson and Katie Whale Twitter: @BristolCCAH @whalekatie

Continence problems in adolescence Continence problems are common in adolescence. Majority of continence problems in adolescents are functional. Multiple risk factors – genetic, biological, psychological, social. Can take many months or years to resolve. Profound personal and social impacts.

What types of continence problems are common in adolescence? Most common cause Prevalence in adolescence Urgency (sudden urge to urinate) Overactive bladder syndrome* 5% Daytime wetting 3-4% Bedwetting 2.5% Soiling (faecal incontinence) Constipation 1.5% Overactive bladder syndrome causes uncontrollable bladder contractions resulting in urgent feelings to go to the toilet, going to the toilet frequently and sometimes leaking urine before reaching the toilet 

Young people’s views of continence problems “You want to stop and you just keep doing it and you can't stop” “(I feel that) there is absolutely no hope that it’s ever going to be better and I’m going to be stuck with this problem forever” “not life threatening, but life ruining” “always thinking about it, always worrying about it” “feeling emotionally adrift from everyone else”

Developing online resources for secondary school teachers Increase teacher awareness of continence problems in adolescents Improve understanding of the impact of continence problems on young people Provide information on how best to support students with continence problems at secondary school

School experiences Reluctance to tell teachers about continence problems “I'm just worried that if I did tell my teachers they might treat me a bit differently, and then other people might find out” Teachers restricting access to toilets “She wouldn't let me go to the toilet so I ended up soiling and it was really uncomfy” Risk of academic underachievement “I missed out on eight marks because I had to go to the toilet constantly” Need to improve teacher understanding of continence problems “There's not a teacher that fully understands. They know how to deal with physical disabilities, but there is not a teacher that knows specifically about my problem”

Key challenges at secondary school Disclosing a continence problem and maintaining confidentiality Toilet access and teacher permission to leave class Missing lessons and exam performance

Possible solutions Clear process for declaring medical conditions and disclosure on a need to know basis Toilet passes / cards Exam arrangements and extra time

Funding Medical Research Council (MRC): Increasing understanding of risk factors and outcomes associated with continence problems in children and adolescents. Economic and Social Research Council (ESRC Impact Acceleration Account): Increasing understanding of the needs of young people with continence problems at secondary school. Email: Carol.Joinson@bristol.ac.uk Katie.Whale@bristol.ac.uk

Resources Bladder and Bowel UK and ERIC (The Children’s Bowel and Bladder Charity) have downloadable resources on their websites: www.bladderandboweluk.co.uk www.eric.org.uk Helplines: Bladder and Bowel UK: 0161 607 8219 or bladderandboweluk@disabledliving.co.uk ERIC: 0845 370 8008 or helpline@eric.org.uk